Chapter 11: Saying Goodbye is Hard

Love, Unbroken

August 29, 2017

My shoulder ached and felt stiff from how I had been lying with my arm tucked beneath me. Most nights, I slept on my side, curled up on the lounge, so I could reach across and rest my hand on Bren’s heart as he slept.

His breathing was laboured, but he was breathing. It was getting harder to know when he was conscious and when he was not. I had been laying my hands on my husband to support him through his final days for most of my waking hours, including the hours I should have been sleeping over the last 48 hours. My soul ached. I couldn’t bear the thought that he might slip away, and I wouldn’t be awake as he leaves.

Bren and I had been sleeping in the lounge room since April, when he left the trial program after it proved not to be a successful option for him. His pain increased with the progression of the cancer. So, we moved to the lounge room to make his life easier. And so he could be in the middle of the kids’ daily lives rather than away from everyone, in our bedroom. Palliative care supplied a recliner when my brave husband could no longer sleep lying flat on his back, side, or stomach because his tumours made it too painful. Bren was on the recliner and slept in a supported sitting position. I slept on the lounge.

The kids and Oti, our rambunctious one year old rescue pup, were sleeping on the floor on mattresses. Last November, we surprised the kids with his 12-week-old puppy self. When they came home from school, a fluffy bundle of excitement with a red bow around his neck was waiting for them, just a week before their birthday and right after Bren’s. From the very beginning, it was hard to tell whether Oti belonged more to the kids or to their dad, because that pup never left Bren’s side. Yet, he cannot wait for the kids to get home each day after school. Secretly, though, I think he was mine. Suffice it to say he was ours, and although we rescued him, it was clear he came to rescue us.

Tyz and Bades could see their dad was getting sicker and wanted to be closer to him and me. They had been with us in the lounge room for the last week or so. As my family slept huddled together, crazy thoughts kept me awake. The grief counselling session with our palliative care counsellor played on my mind. Glenn was a kind man and facilitated the conversations we needed to have. Even so, sitting with my husband, talking about what to expect when and after he died, was a painful discomfort, or to be less polite, head-f@ck, anyone could imagine. We didn’t have to imagine, we just sat calmly and had the conversation. It was bizarre.

We discussed what might happen after Bren’s death for the children and me. And how to best cope with my trauma and help the kids with theirs. Glenn explained that grief was a long road and that we may not experience the worst of it straight away. He gently warned me I should be extra vigilant, especially regarding the kids, as the two-year milestone approached. I couldn’t imagine anything being worse than where we were right then.

Glenn then asked Brendan what his main fear was. He had two. The first was the pain he would be in at the end. The second was the pain we would be in when he was gone. For the first, we could manage his pain with medication. The second we could do nothing about.

We lived in a small, tight community. I know Bren took comfort knowing that our family, friends, and community would continue to support us after his death as they had during his illness. It didn’t take his pain away. Not being here for us when we needed him most was his worst nightmare, but it brought him peace to know we had people around us to support us when he was gone.

Glenn took this opportunity to speak to me again, telling me that there may be a lot expected of me in likely and unlikely situations once Brendan dies, and that I should prepare myself for that. And to know what and where my boundaries would be. Brendan looked at me and said, squeezing my hand, “You only have two things to worry about when I’m gone, the kids. The rest will take care of themselves.” I was incredibly grateful to him for relieving me of the responsibility and burden of worrying about anything other than our children. I was unsure how I would get the three of us through the days, weeks, and years ahead, never mind do anything else.

Having grief counselling together before Bren died was difficult, but it was necessary. It allowed us to leave nothing left unsaid. And Bren could talk about how he would like to die when the time came. He chose who he wanted with him in the room and where he wanted to be, home. With the help of palliative care, I could ensure everything was how he wanted it to be.

Bren wanted simple: the four of us and Oti, together, just like any other day, hanging out in the lounge room chatting while we watched a favourite movie or series on Netflix. Nothing loud or violent. ‘Call the Midwife’ had become one of his favourites. He was more interested in watching life coming into the world than leaving it.

Bren was happy for our family and friends to come and go to spend some time with him throughout his final days, but he wanted the house to be quiet and calm in his last hours. He had become sound-sensitive and couldn’t tolerate a lot of noise. We kept the television or music on low most of the time as soft background noise. It allowed him to feel like everything was normal.

Although his palliative care nurse, his family, and I were desperate to get him to the beach one last time, he quietly made me aware he didn’t want that as much as we did. It’s not that he didn’t want to see the beach, but if he couldn’t jump in and surf, or swim, or play with the kids, seeing it wasn’t worth the pain he would be in to get there. All he wanted was his kids, his dog, and me with him in the comfort of our home. Here he would have everything he needed to leave this world peacefully. His words, not mine. Time and love were all that mattered. Dying is a very personal thing. Being surrounded by unconditional love meant everything to him.

At this stage in Bren’s life, I couldn’t do much for him besides be by his side, which devastated me. But I could do everything I could to make his last wishes come true. I could ensure his kids and dog were close by and tell him repeatedly that we loved him more than the entire world and everything in it, including Volkswagens. And I could make him comfortable and see that things were as easy and stress-free as possible. He would experience a beautiful death; I would make sure of it.

In the still of the early morning, Baden coughed and rolled over as Otis stretched between our two kids. Leaning his back into Baden’s, Oti stretched his paws out and put them on Tyra’s shoulder. The restlessness brought me out of my thoughts. I was amazed they could sleep with all they were going through. And yet they did, and I felt grateful for that small mercy. I instinctively touched Bren’s forehead to see if he was hot. He wasn’t. I went to the kitchen, grabbed a drink of water, and straightened his blankets before lying down again.

August 30, 2017

The sun was just coming up when I called Bren’s palliative nurse, Al, and asked him to return to our house. Bren had gone downhill severely in the last few hours. During his routine check-up the day before, Al spoke to him for the first time about how much time he might have left. I almost threw up when he said weeks and not months. I wanted years. We had never discussed a prognosis during three years of treatment. Brendan was not given one and never asked for one until yesterday.

We hoped that if we didn’t ask, the worst wouldn’t happen. When Al calmly and kindly said, “Brendan, looking at where we are today, we could be looking at about a month,” my world slowly crashed around me, millisecond by millisecond, in a soundless crumbling I will never forget.

I can’t explain how devastating it was to hear that we had no time left. There would be no miracles. Everything went black, as tiny stars closed in on me. I had to bite down on my tongue to stop myself from passing out. I couldn’t be the one fainting when my husband was told he might only have weeks to live. Tears, so many tears, and I couldn’t stop them.

When Al arrived this morning, I could see by the look on his face that things were bad. He told me it was time. I didn’t register what that meant. I thought Bren had a month. Yesterday, we talked about it being a month. It wasn’t right; it wasn’t fair, it wasn’t time. I wanted a month, a year, a lifetime. I wanted my husband, no matter how selfish that was. I know now that when Bren heard four weeks, he knew he would not put himself or his family through another four weeks of hell.

Al quietly told me I should let the kids know that their dad might not make it through the day, and I should get our family and friends who could come to come quickly and say goodbye. It was all happening too fast. I couldn’t get my head straight. Al had to leave to look in on another patient but would return as soon as possible.

I rang my sister, Deb, to come over to be with Bren so I could tell the kids. While she was on her way, I rang Bren’s parents and let them know he wasn’t doing well. I asked them to come straight out. When Deb arrived, she was crying but doing all she could to hold herself together. She stood behind Bren’s recliner, and he slowly lifted his arm back toward her so she could take his hand. She rested her other hand on his forehead. Bren was so loved.

I called Bades and Tyz out of their rooms and asked them to come onto the veranda. They walked outside in front of me, and it was all I could do to make myself follow them. I knew once I told them, their lives would change forever. They would never be the same again.

I took a deep breath and wrapped an arm around each of them as we sat on one of the black metal benches on the veranda. Pulling them in close to me. I could feel the cold slats through my jeans, and it shocked me that I noticed.

“I had to call Al back to see Dad,” I said. “As you know, he got very sick through the night, and I was worried about him. Al has had a good look at him and is worried, too. As hard as Daddy has tried to beat cancer, we don’t think he can.”

Tears fell helplessly over my cheeks and rolled into the corners of my mouth as I spoke. My children were screaming, and I could do nothing to take away their pain.

“Daddy is still trying to fight, but his body is tired from all the tumours and medicine, and he just can’t take it anymore, my babies. We think we are losing him. We have to be ready; Daddy might die in the next day or two. Maybe even today,” I said, as calmly as I could.

I could not believe those words were coming out of my mouth. But I kept going because I had to help them understand what was happening.

“Daddy doesn’t want to die,” I continued, trying to comfort them. But there was no comfort in any words that followed – Daddy might die today.

“He would never want to leave you,” I whispered as my voice broke. “But he can’t help it.”

They kept screaming deep, gut-wrenching cries. I wasn’t sure they would ever recover from what I’d just told them. I had caused them more pain than anyone deserved in those few minutes. They settled a little as they rested their heads heavily on my shoulders, their little shoulders heaving up and down with their now quiet sobs.

“When you’re ready, I think Dad needs a big hug from his kids,” I coaxed, gently.

Before I had finished talking, they had run to him, crying. They threw their arms around him as gently as they could and told him repeatedly how much they loved him and how he was the best Dad ever. As they held him, Bren looked up at me, his eyes wet from tears, his brow creased as he absorbed their pain, and said in a quiet whisper, “I can see a cross in their tears.” Although our hearts were broken into a million tiny pieces, at that moment, I knew heaven was ready to receive my husband. The kids barely left their dads side again, except for a brief reprieve in their rooms every so often, until he was taken from them.

Our day had become inconceivable. Deb was going home to tell her family the devastating news and would ring Mum, Dad, Sue, and Mike for me. Bren’s Mum and Dad had arrived. They were shaken and pale. Al had returned and was able to explain everything to them. Margaret rang Charles and Ellen and asked them to come home. Len and Margaret decided to return to the farm and get some clothes to stay the night at our place. Bren was in a lot of pain, and his vitals had dropped. They wanted to be with him.

Bren’s pain was now beyond management with his usual medication. Al had ordered more potent drugs that would be given through a syringe driver. It was due to be administered at 2:30 that afternoon. Slowly, our closest family and friends arrived to say goodbye. I found it hard to comprehend my husband was dying, and everyone was here to see him for the last time. When his moment of death happened, our time together would be over. I would never see him again. Never curl up next to him or hold his hand. He had beautiful hands.

The phone rang, and it took me a minute to find it. It was Charles. He said Margaret had rung to tell him to come home. He rang me to check if he really needed to before booking a plane ticket. “They get things wrong sometimes,” he explained.

“Get on a plane as soon as you can,” I pleaded. “They haven’t got this wrong.” It was an hour and a half flight from where he lived to our closest airport and then a two-hour drive to our house. I wasn’t sure he would make it in time.

Things were getting chaotic; my mind was like scrambled eggs. I could not think straight through the fog of exhaustion, grief, and confusion. Glenn’s words returned to me.

“People will expect things of you. You will have to set boundaries.” I wondered if he meant it would start this early. I know we were all just trying to survive what was happening, but I was hanging on by a thread and struggling to hold it together.

I hadn’t seen the kids for what seemed like an hour.

“Deb, where are the kids?” I asked as she was heading out the door to go home.

“They’re in their rooms—they’re OK,” she said, hugging me goodbye. She would be back later. My sisters were my earth angels. They kept me afloat as they moved in and out of our home in stealth mode. They headed up a small, tight crew of our closest friends that ensured we got meals, plenty of hugs, and anything else we needed without fuss or interruption. These were our people.

“Yes! We’ve let Charles know. No, come as soon as you can,” Margaret said to Ellen quietly over the phone.

“Stay here. There’s plenty of room. Callie, Tyra, and Baden are all sleeping in the lounge room. You can use one of their beds. I told Charles the same,” she continued.

I was sitting behind Bren’s chair, gently placing my hands on him, using Reiki techniques to soothe him. I knew he could hear his Mum’s phone conversation and felt him stiffen and become agitated.

It was a tough time to have a house full of people. Even the people we loved, and Bren loved his family, but I knew this wasn’t what he wanted.

We had discussed what he would need when the end came and had a plan. I was unsure how much food we had in the fridge or cupboards. And I was sure the sheets on the kids’ beds hadn’t been changed since they stopped sleeping in them. I knew no one would care, but I cared. Then again, I wasn’t in my right mind. I would also need to wash some towels if everyone was staying here. The thought of four more people to look after was overwhelming.

I wasn’t sure how to honour Bren’s wishes without hurting everyone’s feelings. I didn’t want to make things harder for anyone. I really didn’t know how to handle the situation so everyone would feel they were being cared for. I quickly realised that my first duty had to be to my husband and his final wishes. I had promised him it would be the four of us.

Bren could still speak a little as many of his favourite people came to say goodbye, leaving them shattered as they left him for the last time. The syringe driver Al administered after lunch had yet to take full effect. When it did, Bren would lose his ability to speak. Before that happened, he could still tell our family and friends he loved them, one by one, and they told him the same. My Dad was the last person to whom he uttered those words. After Dad hugged him and dragged himself away, Bren said, “Love you, mate.”

“Love you too, mate,” Dad said, touching him on the shoulder as he left.

I sat squarely in front of my husband after the last of our visitors had left, as far inside his personal space as possible, and told him I loved him over and over. I could see he was desperate for me to know he felt the same. But his voice had gone.

I kissed him twice, passionately, and he kissed me back as hard as he could. There were fine traces of blood in his tears and the fluid coming from his nose. I wiped them away quickly so the kids wouldn’t see it.

We chatted, well, I did, about the things we had done and places we had gone. I talked about the night we met and how gorgeous he looked. He tried to respond. It was devastating to think we would never chat or laugh together again. I asked him if he remembered the first thing I said to him. He blinked hard. We always jokingly disagreed on what that was.

As Bren drifted in and out of consciousness, I scrolled through my phone with one hand and ensured the other was always on him. So many of our memories are stored here in photos, messages, diary entries, and blog posts. I showed him photos I knew he would love, hoping he could see them. I think he could.

I was grateful for writing everything down; journaling had become a blessing. He used to tease me about my scribblings. It was something I had done since childhood. Thankfully, I recorded most of our lives together. I reminded him of some parts, the best parts, in whispers, in case he could hear me.